Treatment gives hope to rare skin disease patients

By Christina Fuoco-Karasinski

Sixteen years old is an awkward time for any teen. But for Emilio Stacey of Northeast Mesa, it was especially troubling. The teen found boils on his skin and felt weak and exhausted.

Dermatologists couldn’t figure out what was ailing him. Eventually, he couldn’t get out of bed.

Finally, he met Phoenix-based dermatologist Dr. Lindsay Ackerman, who diagnosed him with hidradenitis suppurativa (HS), a serious immune-mediated skin condition that has a significant impact on patients physically, mentally and socially. It is often misdiagnosed and mistreated.

HS causes small, painful lumps to form under the skin. The lumps can break open, or tunnels can form under the skin, according to the Mayo Clinic. The condition mostly affects areas where the skin rubs together, such as the armpits, groin, buttocks and breasts.

Ackerman said HS is “neither common nor truly rare.”

“It is estimated in the United States around 1% to 2% of the population is affected,” she said. “Some estimate up to 4%. This is really underdiagnosed. I think there are a lot of people living with the disease than we really identify. They’re either living with the misdiagnosis or they’re in isolation.”

Stacey’s first HS hint was the painful, cystic acne-like sores on his face. The dermatologist gave him acne medication.

“After I started taking it, I started feeling really weak. Eventually my bones started hurting,” said Stacey, who works at a Northeast Mesa grocery store.

“Emotionally, it was hard dealing with it. If it was a common cold, I would know it will be better in a few days.”

When Stacey, who turns 21 this month, saw Ackerman for the first time, he had inflamed, tender nodules like large acne cysts.

“It wasn’t a simple boil that resolves with proper treatment,” she said. “Rather, due to the chronic inflammatory nature of the disease, it recurs, resolves and recurs and tends to worsen.”

Like most of her HS patients, Stacey felt lost.

“They don’t understand,” she said. “They were told it was an infection, but it’s not really behaving how they would expect.”

Ackerman helped Stacey with Humira, the only FDA-approved treatment for moderate to severe HS. She said there are also off-label and surgical procedures, ranging from draining the painful areas to hormone-modulating agents.

“We have incredible stories like Emilio’s,” Ackerman said. Her work, she added, has “earnestly changed lives. It’s a privilege to help people like Emilio.”

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